When independent healthcare behaviors develop in adolescents with inflammatory bowel disease

Patients with chronic health needs are expected to gradually assume responsibility for health maintenance behavior as they move toward adulthood. We sought to evaluate the influence of factors such as age, duration of disease, and gender by examining the self-reported health behaviors of adolescents with inflammatory bowel disease (IBD).

Confidential voluntary surveys were administered to all IBD outpatients over age 10 during a 4-month period. Questions addressed responsibility for health behaviors such as medication, provider visits, and communication. Likert scales measured the degree of independence: 1 (my parents only) through 3 (parents share equally with me) to 5 (I do it myself). Patient participation during doctor visits was also assessed.

Of 358 patients approached, 294 (82%) returned completed surveys. Respondents were 51% male and 69% had Crohn's disease. Patients took increasingly active roles, but by ages 19-21 only 45% ordered medication refills, and 50% picked up medication from pharmacy. Only 35% of 19-21-year-olds scheduled appointments and 30% contacted providers between visits if problems arose. Most patients could answer provider questions (55% at age 16-18) but fewer asked questions of the provider (15% at the same age). Males were less likely to order their own prescription refills (P = 0.017) or prepare questions (P = 0.009). Duration of disease did not change skill acquisition.

Adolescents develop independence in managing their IBD slowly and many patients ≥ 18 years are still assisted by parents. Focus on specific skill acquisition may help patients with self-management skills expected in adult healthcare.